Connect
Relentless bile reflux / pain
Hi all,
In short, I've been suffering from the following for the last 2.5 years...
- daily burning in esophagus from reflux pretty much immediately after meals, can last for up to 2 hours
- dull, progressive pain on right side of abdomen just next to belly button and under rib. Can be sharp sometimes and radiate into right shoulder. Longest stint of pain was 4 - 5 days. Worse after eating
- burping and trapped air which causes sharp pain in my back
- Reflux is so bad that food gets stuck on its way down my food pipe and throat hurts a lot in general
- consistently yellow stools - been like that for years now
- Frequent 'IBS-like' symptoms - bloating, sharp cramps, intolerance to fatty heavy foods
I've had the following tests...
- x2 gastroscopy (gastritis and biopsies showed inflammation)
- x1 colonoscopy - clear
- H pylori breath tests - clear
- Fecal elastase to check pancreas function - clear
- Parasite testing - clear
- x3 ultrasounds - all clear
- HIDA scan - around 78%
- various blood tests (LFT, renal profile, CBC etc etc) - all clear apart from a slightly high white blood count during my worst time of pain
- food intolerance testing (celiac, lactose etc) - all clear
- MRCP - all clear
Here's what I've tried...
- lifestyle changes: I've cut out fatty, fizzy, acidic and spicy foods, eating smaller and more frequent meals, elevating pillows at bedtime, not wearing tight clothing, not bending down after meals, not eating too close to bedtime, stopped drinking alcohol, chewing food properly and thoroughly
- omeprazole, esomeprazole, rantidine, gaviscon advanced - no help at all
- cut out gluten and dairy for months - no help
- digestive enzymes, ginger tablets, silicolgel, cold milk, ginger beer
- apercap, colpermin, mebeverine, amitriptyline, prozac, buscopan
- apple cider vinegar, ginger tablets, chamomile tea, milk thistle
- good strength probiotic
- beet juice, potato juice, parsley and all the good stuff for gallbladders
Sooooo totally running out of options here. Seen two specialists, been told I have bile reflux and IBS and that there isn't much else for me. Can anyone shed some light? I've just started charcoal tablets today.
Note... I never get the right dull ache in my abdomen and the reflux at the same time. It is always one or the other. Been told NO to gallbladder removal and that I am too young to have problems with it (I'm 22).
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
@bborth
I am sorry I did not read your last post until today. A rough few days with my 91 year old mama.
I hope all went well with your appointment. So many gastro conditions have the same symptoms and a gamut of test and experienced doctors is the only way to find out what is going on,
Just trying to prepare for my appointment tomorrow with this GI surgeon. Seems like I have run the list of medications to take, metoclopramide being the only one that has helped a bit. Of course you can't take this long term, so this isn't a plan for the future. Carafate seems to help the pain in the chest, but nothing else. Plus make me really spaced out and off balance. So.....getting to the point where I need to try something to gain some quality of life back, and symptom relief to some degree. Not sure how surgeons look at that, but my not being able to work much longer in a career I love (engineer) or do things I enjoy isn't a way to look at the future. One more question.....whenever I compress my abdomen (bending over/twisting the torso a lot) really aggrevates my symptoms, especially in the area my GB used to sit. Any idea what is going on? Could I be moving the bile in my stomach around more? Just feels so acidic down there.
Thank you so much for sharing. So....if you had to do it over again, would you? I plan to have my GP recommend another GI surgeon so I can have consultations with 2 such surgeons. From what I have read, the surgery for bile reflux is less complicated than that for weight loss per se. Basically rerouting the bile duct from the stomach to the small intestine. At this point if the surgery can get me 50% better without too many risky complications I'll take it.
@bborth
I have had a roux en y “with a twist”. ... just means it was a little different than the normal one, I do not know how it is different. Mine was to fix a paraesophageal (sliding) hernia. The reflux that came from the hernia .. which kept pulling my stomach into my chest.. did a lot of damage. I had some complications with the surgery... not the surgeon's fault; just my body. My esophagus shortened and caused a leak.. 1% chance of that happening. It also pulled one loop of my intestines into my chest. I was too weak to have more surgery then and left the hospital with a feeding tube. About 6 months later 2 more loops pulled up into my chest and pushed my left lung against my ribs. I had to have another surgery to repair this.. very high risk, but less than the risk of not having it. It had to be an open surgery and because of the cut they had to do a long recovery.. This surgery was in 2015 and I am in still a lot of pain. I stayed on the feeding tube for 5 more months after the last surgery.. a little over a year from when it was first put in.
Please do not let my experience dissuade you from the surgery. Mine is just an odd-ball case. Weigh all the information and do not hesitate to get second or third opinions.
Best of luck,
Zaroga
Thanks Ethan, it would be good to connect with others who have had this surgery performed. My meeting this coming Friday with the GI surgeon is to see what he thinks about my situation, and how surgery may benefit me. I guess I am not sure what could possible make this better other than Questron (power medication I mentioned earlier) as it is the only medication I have yet to try. I need to nail down the diagnosis of course, but the one red flag so far is the bile that was seen in the "entire stomach area" and this inflammed stomach mucosa. Not sure outside of bile reflux what this could be as we are eliminating things like gastroperesis and such. Just feels so acidic inside me. To accept how I am feeling now for the long term won't work for me.....too much reduction in quality of life plus being on so many medications can't be good long term. What a journey.
Hi @bborth that must be frustrating finding no successful treatments for your bile reflux.
I am hoping @judipogo will return to share her experience with this surgery.
I also wanted to introduce @rosemarya who has had a roux procedure, though not the Roux En Y, and she may be able to share her experience.
Back to you @bborth, is this surgery something your doctor is suggesting?
Could you tell us who was your surgeon and what hospital he works out of? So glad you are feeling better!
Dr. Vincent Chang at Rochester General in Rochester, NY
I have a severe bile reflux after vertical gastric sleeve surgery. My BMI was around 35 . THe surgery was a big mistake. Three weeks after surgety i developed problems with swallowing and pain in esophagus. The surgery was ten months ago. Bile reflex is getting worse, my doctor has advised me to revise the surgery to Gastric bypass.
Now life is horrible. Intense heart attack like pains, vomiting, and corrosive liquid burning insides out. Feels you are in a torture program. I would rather be 300 pounds than this. My weight before surgery was 210. Now I can only eat sugar. Cannot even drink a protein shake. Going to start TPN nutrition therapy.
Hope it helps. Anyone know if TPN therapy would at least reduce the pain. Any doctors, please reply.
Hello, Sorry to hear about your problems after surgery. I had a partial gastrectomy where I had 80% of my stomach removed. They also did a ru en y. My surgery was for bad acid reflux. I previously had a nissen fundoplication which failed horribly. I know since my surgery I have to avoid simple sugar. Protein shakes do cause problems for me. I have found the only ones I can drink are the Atkins shakes because they have no sugar. I can eat fruits fine. I would suggest getting another opinion or 2. When my nissen fundoplication failed I went to the same doctor and he didn't give me much hope. I went to 3 other doctors for opinions. I went online and researched surgeons that specialized in digestive issues, found 3, scheduled appointments and met with them, took all my test results, and met with them to see what they thought would help. Luckily I found a surgeon that had 30 years experience in digestive surgery. He in detail explained and showed me (in drawings) what he could do for me. I had similar symptoms you explained after my nissen fundoplication. Since the partial gastrectomy I had in March of 2019 I am so much better. 210 isnt that heavy. Why did you have the gastric sleeve surgery?
-
Like -
Helpful -
Hug
1 Reaction